Last week I attended a very well-researched conference1 led by Professor Luke Clements, built on a study conducted by Leeds University, CBF (challenging behaviour foundation) and the Tizard Centre funded by the NHS. They have created a video and written a report called Broken2,3 where, in a poll of 214 families of special-needs children, every parent was suffering at least some elements of Complex Post-Traumatic Stress Disorder (CPTSD).
For most of my life I have been an optimistic person who has always tried to make the best of every situation, e.g. I believe with every cell in my body our son is not a tragedy, he is a blessing. Without him I would not have been forced to become the person I am now, and I am grateful for that. I have spent the last sixteen years studying techniques to support myself and others in that positive place, thinking nothing could touch me in my ‘happy bubble’.
I was wrong. My life has been turned upside down and inside out by the actions of our Local Authority (LA) and Integrated Care Board (ICB). I feel like in the last 3-4 years I have been assaulted physically and mentally so many times with little opportunity for recovery. I still don’t truly understand why, as all I have ever done is try to support our son and survive. I sit here writing this feeling broken, a whisp of the person I used to be. My energy levels are depleted and my ‘get-up and go’ feels like it has gone. In a rare escape with my daughter recently she told me that every time I meet her friends I trauma-dump on them… not the way I set out to influence the world!
Sadly, many special-needs parents reading this will understand. If you are not a special-needs parent, then imagine running a marathon on a daily basis while studying law, occupational therapy, and speech and language therapy all at the same time! Some nights you sleep, others you are woken by hearing your child’s seizures – or even worse, the thoughts and fears of what the LA might do next. You are terrified and in a constant state of alert, desperate for some rest. A fight-or-flight response that is designed to keep you safe from a Saber-tooth tiger is switched on 24 hours a day. While all this is going on you are expected to react professionally, in a timely manner, to the demands of the LA/ICB. When in the thick of it, you can’t even eat as you don’t have time and feel permanently nauseous. When the heat is off, you gorge on anything that will bring you comfort. You constantly crave ‘normal problems’, listen to your friends and family talk about arranging events and holidays, how they are furthering their careers. While I am really truly happy for them it all feels like an unachievable dream for me.
To say it has been a tough few years is an understatement. Don’t get me wrong, I still feel immensely blessed – we have so much to celebrate. We have our son safe at home with a wonderful carers looking after him. Our daughter is an amazing young lady who, despite all of this trauma, is fulfilling her dreams studying at her chosen university. We are still functioning, and we have a stable roof over our heads thanks to my husband providing enough for us all to do that.
Unfortunately, I know so many families who are not in this position. Their children have been taken into care, losing their homes; relationships have been shattered, leaving broken families. Many special-needs children responding to this stress and the parents defending them are treated like criminals rather than with compassion. It breaks my heart hearing each story.
I find myself asking, what do I want to do next? I really want to rest and recover and get myself fit again, however this want finds itself conflicted with many others: wanting to support my kids as they have been so neglected throughout this period; resuscitating my career which I adore and nourishes me; supporting all the parents I have met on my journey who have held my hand and helped me; and getting involved in a political campaign. I cannot unsee what I have seen, but I want to work with the LA/ICB locally to attempt to create positive change for all of us. Needless to say, I often find this list overwhelming.
One of my favourite sayings is ‘you can’t eat an elephant in one go, you have to chop it up into pieces’. One day at a time, one step at a time, one conversation at a time, one email at a time, one person at time I aspire to achieve the change I want to see, in order to attain what we want for Rohan, and to help other families gain what they need to support their children.
With your help we can create more awareness, lobby our MPs and hold our LA and ICBs accountable through using our county councillors. So please read the links below and share this widely.
1 A link to Cerebra’s website, summarising the conference. Please donate to this amazing charity, they do so much research and work supporting families. Building practical solutions for traumatised families – Cerebra
2 A brilliant 12min video summarising the report below. Family Trauma: A Broken Care System – Cerebra
3 This is a report commissioned by NHS to look at the trauma that the system creates for families of special needs. Broken CBF final report (challengingbehaviour.org.uk)
FYI Photo of me and two amazing mums that have kept me going, we all attended the conference last week.
